GI check up

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Monday: We were concerned about Sophia on Monday because her incision/tube area was reddened, and she had a low-grade temp.  She also seemed to be breathing heavier when she ate.  Our cardiologist said not to worry about the increased breathing rate unless she is at rest.  With her heart condition, this will happen with stressors like eating and fevers.  She referred us to our GI doc for the G-tube question, because as she put it:  “It’s like ‘Gone With the Wind’ when they talk about ‘not knowin’ nuthin’ about birthin no babies;’ I don’t know nuthin’ ‘bout no G-tubes.”  The GI doc scheduled an appointment with us for Wednesday, but said that things sounded okay.  Tylenol helped and that was the last of her fevers.  This was our very first day post-hospital where we had no appointments and no one coming in to the house, so we tried to catch up on some sleep (but weren’t very successful).  


Tuesday: The door bell rang early this morning:  Fed Ex had arrived with a box of 300 thickening packets for Sophia’s bottles.  Hopefully, she’ll be able to stop having things thickened after her next swallow study (July 26), but you have to buy these things in bulk, so we are well prepared.  (We still have a bulk box of flavor packets if anyone wants to flavor something bubble gum or banana.)  


The home health nurse arrived right after that and said Sophia looked really good.  She’d gained another 2 ounces.  When the nurse left our house, she was going to visit a teen mom with a 4 1/2 pound baby.  Boy, we think this is hard when we are twice that age and there are two of us, things must really be overwhelming for that mom!  It sounds like hospitals use home health to monitor questionable parents; I sure hope that isn’t why we have them.  (The nurse did say we were refreshing, so I hope that wasn’t the case.)


It was such a beautiful day that we spent some time trying to get our yard spruced up a little bit.  It certainly shows that all we’ve done in it since April 2nd is mow the law!  I’m sure our neighbors are starting to get embarrassed with all the foot traffic our mall gets.  A woman walked by with an 8-month-old baby and commented on how good Sophia was (laying on my shoulder napping while I weeded).  I guess that isn’t normal?  


Wednesday: We’ve finally had a chance to review the general, non-Down Syndrome specific parenting books, and it seems as though we probably haven’t been letting Sophia sleep as much as she should.  We didn’t realize that infants her age should sleep between 15 and 18 hours a day.  Since it takes her almost an hour per feeding with meds, bottling and gavaging, we lose 8 hours right there!  That gives us one more hour of awake time (on the minimum end).  I guess in the beginning they were so concerned about her sleeping too much, and we feel like there are so many therapies to do with her, that we grab onto any chance she seems awake.  


We saw the GI doc today.  He thought her incision/tube area looked fine; and told us to just keep putting Neosporin on it.  He also gave us permission to stop her stomach emptying med (Reglen) and stop her Prilosec after she gets her Mic-Key button in place of this tube (July 13).  He also gave his consent to rearrange her feedings so that she can sleep through the night.  I originally thought that this was more of a parental convenience thing and since I got up to pump anyway and John is a night owl, I thought it would be best for her to continue the feedings overnight.  Since I read about the neurological value in an extended period of sleep, we asked for permission to try that.  She is 8 weeks old now (corrected for her prematurity), so she is at the age when babies would often start sleeping through the night.  We have to do this gradually, so will try both cluster feeding at night and increasing each of her remaining feedings.  


We are also trying to get a handle on a napping schedule (even though it appears that she should basically be sleeping whenever she isn’t eating).  She has no problems going down for a nap in her bassinet (I presume since she lived only in a bed at the hospital).  She hasn’t been fussy or anything when we lay her down while she is still awake but getting sleepy.  We are sure lucky, as the books describe letting babies cry it out for several minutes (and I would be horrible at that).  


The teacher with whom I first coached mock trial and his wife came by this afternoon.  Bonnie works in Early Childhood Special Ed and was very reassuring about the bonds children form with their care providers in these age 3-5 special ed classrooms.  Papa still says he’s home schooling her, so he doesn’t have to send her to school when she’s so little, but I expect he’ll change his mind about that later on.  


Sophia was fabulous in her car seat on the way to the doctor, but was not very happy on the way home.  I thought it would get better the more practice she had sitting up and without having such a problem with reflux, but it must be the straps she dislikes so much.  We realized she also has a very specific “I hate this car seat and I mean it!!” cry.


The GI doc talked to us for the first time about the potential issues we might face with her G-tube and various complications.  I left there pretty scared about the ramifications if Sophia gets sick.  It sounds like any type of illness, in addition to the complications for her heart and lungs, could lead to her G-tube leaking and getting infected.  He said she was doing really well right now, so we should work to really build up her strength and size.  He also said that often times babies with G-tubes need to start with continuous overnight feedings and since she never needed that she was doing excellent and that I needn’t worry.  According to his growth chart, her height and weight are exactly matched up.  He says the cardiologists like their babies chunky, but in his mind, she is in great shape.